Celiac Disease 104: Newly Diagnosed

For some, hearing that they have celiac disease is a relief, a reason for symptoms and a light at the end of the tunnel. For others, it can be scary and daunting. Many will have a mix of feelings. All of this is completely normal.

No matter what you may be feeling upon hearing you have celiac disease, you are not alone. Many places have support groups for people with celiac disease, both in-person and online, that can be very helpful.

If you are overwhelmed by your new diagnosis, don’t wait to reach out to a mental health expert to talk through the changes.

Relaxation techniques, such as yoga, meditation or mindfulness may be very helpful.

Working together with your health-care team, you can make a treatment and nutrition plan just for you, to help control your symptoms and put you in charge of celiac disease.

With Your New Celiac Disease Diagnosis, Keep in Mind:

You must follow a gluten-free diet (GFD) to get rid of your symptoms, allow the small intestine to heal and stop future damage.

Talk with a dietitian, as well as your gastroenterologist, until you feel you grasp the new changes.

Speak up! If you have questions, concerns or still have symptoms, share them with you doctor as soon as possible.

See your doctor regularly. Your doctor may do check-up tests (like blood tests or an endoscopy) to see your progress.

Even being exposed to small amounts of gluten may make your symptoms worse. This is often not planned and may come from unexpected sources of gluten, such as cookware (if it has been used to cook food that has gluten), salad bars and certain medications. Your doctor or dietitian can help you find and learn about these hidden sources of gluten.

While you may be tempted to cheat and may not notice much of a problem when you do, it is important to keep in mind that your intestine will still be harmed by gluten, it will not heal, and you may run the risk of long-term problems.

There are patient-oriented celiac disease support groups. Check out Additional Resources for more information or talk to your doctor about groups in your community.

Facts About Celiac Disease:

Celiac disease is not a rare disease. Recent research has shown that as many as 3 million people in the U.S. (about 1 percent of the population) may have celiac disease.

It is very common among first-degree family members of people who have celiac disease, such as brothers, sisters, parents and children.

Celiac disease can be found in both children and adults and people may live for years without knowing they have it.

In some patients, the disease shows itself after an event such as surgery, pregnancy, viral infections or severe emotional stress.

The small intestine, which is about 20 feet long, finishes the process of digestion, takes in the nutrients and passes the leftover material on to the large intestine for elimination. The small intestine is lined by tiny, fingerlike protrusions, called villi. Villi absorb nutrients from food. Celiac disease hurts the villi. Without healthy villi, nutrients will pass through the small intestine without being absorbed and you may become malnourished and become deficient in some vitamins and minerals.

Celiac disease is both an autoimmune health issue, because the body is hurt by its own immune system, and a disease of malabsorption, since your body cannot absorb enough nutrients, vitamins and minerals.